Hello, my name is London...
I was born on October 7th, 2007, just in time to have a Halloween costume! Mommy wanted me to be a little black cat (Mommy loves cats, but not like a crazy cat lady)... She tried to make me a hat with cat ears but when she put it on my tiny noggin she said it looked more like Batman- so she decided to make me a Batbaby costume instead. Mommy loves Batman! For the record, Daddy's more of a Superman kind of guy. Here's me in my costume!
When I was a baby, Mommy had to take me to lots of doctors... She always said that I would cry everyday and all the doctors would tell her that I was fine. But I wasn't really fine. Sometimes, after we came home and Daddy was at work, Mommy would hold me and cry. My arms were too little to put around her neck.
One day Mommy took me to a doctor who told her to take me to another doctor. That doctor said I had to go into a big machine so they could see my brain. There was a man there that said it would take me to outer space- it never did. I went home with Mommy that night. A while after that I had to go again to the doctor, but this time I got to see MY doctor. Mommy told him about the machine, then there was a paper with lots of words. My doctor said he didn't know what it meant but he called someone who DID know. Then Mommy had to hurry and take me back to the place with the machine, only this time I had to get a poke and I fell asleep for a long time. When I woke up, Mommy and Daddy were there and after I ate we got to go home. But we didn't stay home for very long, we went back to the place with all the machines and doctors. There was a man there that told Mommy and Daddy that I had incomplete lissencephaly. He told Mommy that it wasn't her fault. He told them about the seizures and he told them all about how I can't see everything.
After that, I sometimes had to go to the doctor and they would put wires all over my head. Then they wanted me to sleep for a while, but sometimes I couldn't sleep with all those wires. Mommy had to smash pills and put them in my food. They didn't taste very good so sometimes I would spit out my food. The doctor said hopefully the pills would make the seizies go away... but it didn't work. I started having new friends come over to my house, they would help me look at shiny things and lights and they would make me touch lots of different feels. I didn't really like different feels before, but now I don't mind them so much. They would even make me roll over and try to hold up my own head or use my arms to reach. But I didn't like reaching then, and I still don't like reaching now!
Back then, sometimes I would still smile...but after a while I didn't want to smile anymore. For some reason, Mommy started giving me pokes every day! She told me that it hurt her heart when she had to do it. I wanted to tell her that it hurt my leg. The pokes made me so I was really sleepy and hungry. I sleeped all day and all night, and I would only wake up when I wanted to eat. The pokes also made me hurt all over and I couldn't move very good. The pokes made me puff up like a balloon, and I wasn't very comfortable, even when someone tried to snuggle me.
The pokes didn't last forever and I was happy about that. I still had friends come over to help me with things, and I still had seizies, but at least I didn't have those pokes!
One day Mommy and Daddy said Mommy was going to the hospital. She told me that I was going to have a baby brother- I wasn't sure what that meant. They stayed away for 3 sleeps, and when they came home they showed me my baby brother. They named him Kannon. Mommy also picked his name! I sort of didn't like Kannon at first, he cried a lot and I had to share my room. Sometimes he stinked up the whole place!
When I grew bigger, Mommy said I could go to school! I was happy about that because I like to get out of my house sometimes. Mommy got to decide what school I would go to and I sure love it! I have lots of friends there that help me do things and I even have friends who are just like me! My favorite day at school is swimming day! Floating on my back is the best and the water makes me feel light and floaty like a marshmallow.
I am 4 years old now and Mommy and Daddy finally put me in a room all by myself. I love my bed and my animals! I like to watch movies on my ceiling and I mostly like that my brother doesn't stink up the place. (Don't tell him, but I really DO like him... sometimes.)
When I go to school I ride in my chair with wheels. A yellow bus picks me up and brings me home. I like to eat soup and frosting, but not together. I love looking at the lights and especially the sparkles in the sky. My favorite noise is my pink rubber ducky. I need lots of extra help to do thing but I think it's ok with Mommy and Daddy because they are always kissing my cheeks.
I hate my baths and I don't like when Mommy brushes my hair. I cry a lot and Mommy doesn't know why. She sometimes cries, too, and I don't know why. I still can't put my arms around her neck. Mommy says that one day things will be easier, so I will be excited for that!
So that's all about me, London. In some ways, I'm probably just like you.